How do I balance out the needs of two children on the spectrum and two NT kids?
Answer
Parenting is hard work. Unless you have a child with Asperger’s Syndrome or Autism, you just have no idea about the true demands this adds to everyday parenting. A second child on the spectrum does not always mean more of the same because every child is affected so differently. Balancing the needs of a large family is a full time job, even without Asperger’s Syndrome!
It is easy to feel overwhelmed and stretched too thin when you have so much on your parenting plate. Planning a strategy to help meet everyone’s needs is necessary. Don’t forget to take care of yourself so you’ll feel like taking care of everyone else.
Taking care of yourself:
Participate in support groups focused on the needs of Asperger’s families.
Find respite care when you need a break. Everyone deserves to get out and relax for an hour or so.
Do not ignore your hobbies. A mother with four kids is going to have to schedule time for hobbies, but it is important to do things you enjoy for relaxation and personal growth.
Keep in touch with your friends. You need this form of support. Your friends know you and know how to lift your spirits and keep you motivated.
Taking care of your kids:
Spend one-on-one time with each child. Focus a little time each week on each child. They all enjoy the special attention and it gives you a chance to teach each one something new or enjoy a favorite-shared activity.
Keep in touch with each child’s teacher. The children spend a big chunk of time at school. Knowing what is going on at school will help you be a more effective parent and advocate for your children.
Look for ways to make life fun and ‘normal’ for your family. “Top Ten Tips: A Survival Guide for Families with Children on the Autism Spectrum” by Teresa A. Cardon, M.A., CCC-SLP; foreword by Kristi Sakai is a book that lists practical tips for living with Asperger’s and how to blend all of your family into everyday life situations. Suggestions cover life at home, at school, and in the community.
Listen to each of your children. Sometimes moms of many can get so busy that they forget to stop and listen. A few minutes of listening to each child can clarify the causes of problem behavior or illuminate special moments.
Finding balance is a goal for which to aim. With a little investigation and preparation, you will find what works for each of your children and your family as a whole.
"We recently learned that our son has High-Functioning
Autism and are concerned about how to approach this new challenge.... his triggers, learning problems, treatments, added stress to our family, how to explain autism to him... etc."
Moms and dads can do a lot to help their kids with High-Functioning Autism and Asperger’s Syndrome. But, it's important to make sure you get the support you need. When you're raising a youngster on the autism spectrum, taking care of yourself is not an act of selfishness—it's a necessity! Being emotionally strong allows you to be the best mother or father you can be to your “special needs” son or daughter.
If you've recently learned that your youngster has High-Functioning Autism (HFA) or Asperger’s (AS), you're probably wondering and worrying about what comes next. No parent is ever prepared to hear that a youngster is anything other than happy and healthy, and a formal diagnosis can be particularly scary. You may be unsure about how to best help your youngster. You might be confused by conflicting treatment advice. You may have been told that High-Functioning Autism is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference. These are all common responses.
While it is true that High-Functioning Autism is not something a child simply "out-grows," there are many treatments that can help these kids learn new skills and overcome a wide variety of developmental challenges. Assistance is available to meet your youngster's special needs. With the right treatment plan and a lot of love and support, your youngster will learn, grow and thrive.
Best tips for parents with newly diagnosed children on the autism spectrum:
1. Rather than focusing on how your HFA or AS youngster is different from other kids and what he is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing him to others. Feeling unconditionally loved and accepted will help your youngster more than anything else.
2. Kids with High-Functioning Autism have a hard time adapting what they’ve learned in one setting (e.g., the therapist’s office or school) to others, including the home. Creating consistency in your youngster’s environment is the best way to reinforce learning. Find out what your youngster’s therapists are doing and continue their strategies at home. Explore the possibility of having therapy take place in more than one place in order to encourage your youngster to transfer what she has learned from one environment to another. Also, be consistent in the way you interact with your youngster and deal with challenging behaviors.
3. Become an expert on your youngster. Figure out what triggers his disruptive behaviors and what elicits a positive response. What does your HFA youngster find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects him, you’ll be better at troubleshooting problems and preventing situations that cause problems.
4. When it comes to treatment for High-Functioning Autism, there are a variety of therapies. Some focus on reducing problematic behaviors and building communication and social skills, while others deal with sensory integration problems, motor skills, emotional issues, and food sensitivities. With so many choices, it is extremely important to do your research, talk to treatment experts, and ask questions. But keep in mind that you don't have to choose just one type of therapy.
The goal of treatment should be to treat all of your youngster's symptoms and needs. This often requires a combined treatment approach that takes advantage of many different types of therapy. Common HFA treatments include speech-language therapy, play-based therapy, physical therapy, occupational therapy, nutritional therapy, and behavior therapy.
5. Secure a private spot in your home where your youngster can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your youngster can understand. Visual cues can be helpful (e.g., colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety-proof the house, particularly if your youngster is prone to wild tantrums or other self-injurious behaviors.
6. Create a personalized treatment plan. And keep in mind that no matter what treatment plan is chosen, your involvement is vital to its success. You can help your youngster get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home. When putting together a treatment plan for your youngster, remember that there is no single treatment that will work for every child. Each boy or girl with High-Functioning Autism is unique, with different strengths and weaknesses.
Good questions to get answers to include: How does your youngster learn best (e.g., through seeing, listening, or doing)? What are your youngster’s strengths? What are your youngster’s weaknesses? What behaviors are causing the most problems? What does your youngster enjoy and how can those activities be used in treatment? And, what important skills is your youngster lacking? A good treatment plan will: (a) teach tasks as a series of simple steps; (b) provide regular reinforcement of behavior; (c) offer a predictable schedule; (d) involve the mother and father; (e) build on the youngster's interests; and (f) actively engage the youngster's attention in highly structured activities.
7. Think positive. It’s impossible to predict the course of High-Functioning Autism. Don’t jump to conclusions about what life is going to be like for your youngster. Like everyone else, children on the spectrum have an entire lifetime to grow and develop their abilities.
8. As the parent of a youngster with High-Functioning Autism, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something’s wrong. Don't wait to see if your youngster will catch up later or outgrow the problem. Don't even wait for an official diagnosis. The earlier kids with on the autism spectrum get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your youngster's development and reduce related symptoms.
9. Every mother or father needs a break now and again. And for a parent coping with the added stress of High-Functioning Autism, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks. Look for respite care options in your area.
10. Figure out the need behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for kids with High-Functioning Autism. When an HFA boy or girl acts-out, it’s often because the parent is not picking up on the child’s nonverbal cues. Throwing a tantrum is his or her way of communicating frustration and getting the parent’s attention.
11. If stress, anxiety, or depression is getting to you, see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling. Marriage or family therapy can also help you work out problems that the challenges of life with an HFA youngster are causing in your marriage or with other family members.
12. Joining a support group is a great way to meet other parents dealing with the same challenges. Moms and dads can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation you may feel after receiving your youngster’s diagnosis.
13. Know your youngster’s rights. As the mother or father of an HFA youngster, you have a legal right to: (a) seek an outside evaluation for your youngster; (b) request an IEP meeting at any time if you feel your youngster’s needs are not being met; (c) invite anyone you want—from a relative to your youngster’s physician—to be on the IEP team; (d) free or low-cost legal representation if you can’t come to an agreement with the school; (e) disagree with the school system’s recommendations; and (f) be involved in developing your youngster’s IEP from start to finish.
14. Learn as much as you can about High-Functioning Autism. The more you know about it, the better equipped you’ll be to make informed decisions for your youngster. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.
15. A youngster coping with High-Functioning Autism is still a kid. For both you and your child, there needs to be more to life than therapy. Schedule playtime when your youngster is most alert and awake. Figure out ways to have fun together by thinking about things that make your youngster smile, laugh, and come out of his shell. He is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your youngster’s company – and from his enjoyment of spending un-pressured time with you. Play is an essential part of learning and shouldn’t feel like work.
16. Pay attention to your youngster’s sensory sensitivities. Many kids with High-Functioning Autism are hypersensitive to light, sound, touch, taste, and smell. Other HFA kids are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid’s disruptive behaviors – and what elicits a positive response. What does she find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects her, you’ll be better at troubleshooting problems and preventing situations that cause difficulties.
17. Positive reinforcement can go a long way with HFA kids, so make an effort to “catch your child doing something good.” Praise him when he acts appropriately or learns a new skill, being very specific about what behavior he is being praised for. Also look for other ways to reward him for good behavior (e.g., giving him a sticker, letting him play with a favorite game, etc.).
18. Kids with High-Functioning Autism tend to do best when they have a highly-structured schedule or routine. They need and crave consistency. Set up a schedule with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your youngster for it in advance.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
"What are the first steps parents should begin to take when they believe their child may have autism?"
For many moms and dads, finding out that your youngster has ASD level 1, or High-Functioning Autism (HFA), can be a mixed blessing. On one hand, a positive diagnosis gives rise to the prospect of management and greater certainty as to the factors at play in your youngster's life. On the other, most moms and dads are unprepared for the changes having a son or daughter with the disorder invariably brings.
We've compiled a list of the top 10 steps to take if you think your youngster may have an autism spectrum disorder, or if you've had your youngster diagnosed already:
1. Be honest with yourself. At times, rearing a son or daughter with HFA can cause you anger, sadness, anxiety, frustration and depression. Be open to understanding that you will, at times, feel all these feelings, and allow that authenticity to give rise to the possibility that you will take care of your own needs. In doing so, you can more effectively tend to the needs of others. Don't feel the need to explain or justify your actions to others. However you cope with the situation is exactly the way you are supposed to.
2. Contact community services and inquire as to whether you are eligible for some type of family benefit as a parent of a youngster on the autism spectrum. Your doctor should be able to advise you on this.
3. Contact your local Autism Association and ascertain what services are provided through the service. Make use of private and government resourced services.
4. Permit yourself to take stock of your situation from a place of positivity. With diagnosis comes some certainty, as you and your youngster are now dealing with a known quantity. There's nothing wrong with taking each day at a time, and understanding that you can now make a difference to your youngster's life, which you could not in the absence of a diagnosis. You're youngster has always had the disorder. The day your son or daughter receives a diagnosis is the first step in the right direction.
5. If your son or daughter is in school, contact the Principal and advise him or her of the diagnosis. Many schools are aware of – and, in fact, provide information on – autism. School counseling is designed to assist with the condition. In addition, ask your youngster's school whether they are aware of any parent workshops for autistic children.
If your child is older, home study and tutoring may be an option. It is important to be assertive in ensuring that your school can properly advocate for your youngster's needs, and ideally this can be achieved by working within the school protocols. There is no need for you to underestimate your youngster's potential, and certainly this attitude should be reflected in the educational institution. Involve yourself where possible in your youngster's educational and learning environments.
6. Invest in your own education. There is a vast quantity of information on autism spectrum disorders available, both online and in the form of medical literature. Sign up for information seminars, online e-courses, and if you are looking for immediately available information, give consideration to investing in an ebook written by an expert on autism spectrum disorders. Knowledge is power.
7. Involve your family in the process, and do your best to maintain objectivity. Kids on the spectrum have certain special needs; however, they are (for the most part) high-functioning children who can thrive with appropriate and measured care. Try and maintain a balance between focusing on providing that care, and being a spouse and parent to the rest of your family.
8. Make inquiries with your doctor for a referral to someone who has experience with autism spectrum disorders. Having professional assistance can make an enormous difference to how effectively you can help your youngster cope with the disorder. Permit those professionals you consult to guide you through the process and make the most of their advice.
9. Make inquiries within your local community as to the support groups available for those with HFA and for moms and dads of these children. Sharing your situation with others who are in a position to fully appreciate it can make an enormous difference.
10. Remember to smile. You have a special child. One day, he or she just might be the one looking after you.
Resources for parents of children and teens on the autism spectrum:
“Hello, I’m a single mother raising a 5 y.o. son with high functioning autism. My ex is also on the spectrum, he has the older diagnosis of Asperger Syndrome. I get no parenting help or financial assistance from my ex. So I’m the only parent my son has basically. Any tips for single moms raising children on the autism spectrum? Thank you!”
When a mother is a single parent and there is a youngster with High-Functioning Autism (HFA) to care for, the challenges can make life feel like a true test of endurance, but it can be done. It does take more effort and organization, though. Single parenting a child with HFA can be extremely stressful – as well as rewarding. Finding solutions to most of the problems is the first step toward keeping you from feeling overwhelmed. Almost every problem has a solution. The real trick to success as a single parent is not losing yourself in the parenting process.
Tips for single moms with an HFA child:
1. First of all, know that you are not alone. Having an HFA youngster can feel very isolating. It’s easy to stay home and think that you are the only one dealing with that situation. Seek out support groups.
2. A single mom needs a social life as much as anyone else. In addition to caring for your son, you may be working full time, meeting the needs of your other kids, and taking care of the home, which leaves you little free time. Fatigue takes on a new meaning, and having social interaction outside the home is so far on the back-burner it is hard to remember what it was like to “have a life.” Nonetheless, it is important to carve-out some time in your schedule for fun social activities. The key is having fun interaction with other grown-ups.
3. Read everything you can about your son’s disorder. The Internet also offers a broad spectrum of information on nearly every type of disorder. Websites, chat rooms, and the like are tremendous sources of information about conditions, treatments, and medications that are up-to-the-minute.
4. Avoid being argumentative with your ex-husband over his lack of interest in being a co-parent. It won’t get you anywhere.
5. Be your son’s best advocate. Fight for the best information, treatment, doctors, and options that exist. Familiarize yourself with the law. Every mother raising a child on the autism spectrum has to be her own researcher.
6. When stressed-out, single moms often find themselves less able to connect with their kids or focus at work, which may lead to acting-out behavior by the children, time-consuming mistakes at work, and other things that increase stress for the mother and her family. Therefore, taking a proactive stance on stress-management is quite important. Having several quick stress relievers on hand (e.g., breathing exercises), as well as long-term stress-management strategies in place (e.g., regular exercise, meditation) can relieve significant stress for single moms.
7. So much of being a mother takes an emotional and physical toll on you that you have to get out and do something for yourself on an ongoing basis. Try an activity that you never did before, or go back to something you gave up in your marriage (e.g., learn how to play a musical instrument). Put yourself out there. Try anything creative.
8. Remember that your son’s disorder is not your fault, nor is your spouse to blame. It does no good to look for someone to focus your anger on. Pointing your finger at your spouse or his medical or family history is not productive and can be extremely hurtful. Blame can only damage the relationship further.
9. Consider getting a pet. If you don’t have one, think of getting one. It takes the focus away and puts it on something else. Animals spread love around.
10. Enjoy your own company. It may have never occurred to you when you were married that you could actually enjoy your own company. You can do that. Also, don’t date too soon. You can fall in love too quickly. You can’t be a great mother unless you are a great person.
11. Find a support group. If you can’t find it in your community, you can find one online. You have to make a concerted effort to start to build your new family based on reciprocity and support. It can also help to start building self-esteem. You realize you are not the only one.
12. Remember that even if the relationship with your ex has no chance in the world of being civil, there needs to be a peaceful environment for your HFA son.
13. If you don't have anyone in your life that you can share your feelings with on a daily basis, work at developing friendships that are true give-and-take relationships. A local support group that includes single moms might be helpful. Some support groups have a network of mothers who are on “phone duty” that you can call at any time when you need to talk or vent your emotions.
14. After a divorce, ex in-laws can become a problem for you. A direct approach to the grandparents may not be welcome. If you find yourself in this situation, begin by bringing the matter to the attention of your ex, who may be willing to intervene on your behalf. If your ex refuses to support you in this matter, limit your interaction with the grandparents as much as possible. While they have every right to see their grandson, you can and should limit your own time with them for your own sanity.
15. Kids with HFA may seem to be unaware of the environment around them, but they usually are much more in tune with the emotions of others than it appears. If the mom and dad are arguing or fighting, the youngster is apt to act-out with defiant behaviors. The grown-ups in the situation, by keeping their own tempers in check, can prevent this. Remember that although your relationship may be over, the relationship both of you have with your son is not.
16. Know that ALL your feelings are normal. Be sad. Be mad. It’s only natural.
17. Move your bedroom to a different room in your house. Make the old one a study or a play room. Redecorate to reflect your individual tastes and make the house more of your home.
18. Next time you're feeling particularly done in, declare a day off from: worrying, saying the right thing, planning ahead, multitasking, making phone calls, making appointments, knowing it all, holding it in, handling details, exercising, solving problems, serving as case manager, caring what other people think, being Supermom, being behavior cop, doing research, fighting battles, filling out forms, etc.
19. Your HFA son may push your buttons, but giving big reactions to bad behavior may send the wrong message. Showing that you can control your feelings and avoid meltdowns yourself models appropriate behavior for your son, and leaves you feeling better, too.
20. Lastly, pray for guidance and assistance from your Higher Power!
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
• Anonymous said... Federal tax credits • Anonymous said... First of all - well done. Be proud of yourself for getting you both this far. Just recognise you're not superhuman. You will need help and support - you both will. Xxxx • Anonymous said... Have support somewhere. Friends, family, church, local support groups- whatever is available & works- use it. • Anonymous said... I can relate to you. It's a very difficult road especially when working and caring for other children as well. Stay away from people who are negative or judgemental, they will only bring you down. So many people are ignorant and misinformed about HFA and being a single mum can bring extra judgements. Look for support of other mums in similar situations who can understand and relate to you. Hopefully you have got a close friend or other family member who can offer you some respite, even for an hour or so to grab a coffee when things are really tough. Dr Tony Attwood, Sue Larkey, ASPECT, great websites that offer information, tip sheets, workshops etc. I find that reading a lot about HFA helps to validate and reassure me about what I am doing especially when people are questioning me. Depending on where you live you can apply for some financial assistance for your HFA child, talk to your child's paediatrician about what you're entitled to. Good luck, keep up the great work and remember you are not alone • Anonymous said... Invest in an advocate or education lawyer to help you with advocating for your child at school. Even if the school/teachers have a good relationship w you this is important! You will never know how much it could have helped your child - I am a special ed teacher and a single parent of a kiddo on the spectrum and this is one thing I would have done from the start if I'd know better. Another thing I would have done was find a community that supports me - like a church or group or club. And the best thing you will ever do is to seek balance - keep time for laughing and fun. Enjoy your time - he's growing up and he'll never be this age again • Anonymous said... Oh, and don't expect people with two parent households to get it - don't look for sympathy - there's none out there - just carry on doing a wonderful job and the greatness you put into your parenting will be your reward. • Anonymous said... Right here with you. I'm a mom of three, with one HFA. It's rough but we are managing. I agree with the above comments. Surround yourself with happy, supportive people. The are programs out there, it just might take a few tries to find the right one. • Anonymous said... Routine, routine, routine!! I am a single mum of 3 with 15 yr old dtr diagnosed 12 mths ago. She refuses to let her father have any involvement in her life due to various reasons. She is very high maintainence with depression & anxiety to go with it literally living in my pocket 24/7. I find by maintaining a reasonably rigid routine she copes better with daily life giving me the chance to get stuff done & look after my other 2 who are 13 & 9. I look for her triggers & try catch it before she melts down completely. She has a pet rabbit that I give her before crisis point, pop her into her room with it where she cuddles it til she settles a little (rabbit doesn't seem to mind to much either lol). It is very hard, isolating work but worth the love from your child. I find that for me routine is the best way for us both to manage - hope it helps. Good luck xo • Anonymous said... tip for the day: you are not alone • Anonymous said… It is a hard job to be a single parent. After 2 failed brief marriages I am single mother again with a 14 year old son. He is battling depression and having issues with communication/ socialization despite being in a mainstream private school for 9 years. Every day is a challenge. In my spare time I enjoy doing absolutely nothing, except watching tv. I'd like to join a support group. Any suggestions online? • Anonymous said… I’m a single parent with a child with HFA and other children as well. I think the most important thing is to learn to accept that your life looks different than your peers’. You can’t do all they do, your kids can’t just “roll with it” or stay out late so that you can do more family/ social events. When I accepted that our lives were just different, it took a lot of pressure off both myself and my kid to look “normal.”
Your child has recently been diagnosed with high functioning autism (also called Asperger’s). You are relieved to know that there is a name for the odd twists and turns your child’s life has taken, yet you are also very concerned about how he or she is going to cope with this life-long disorder.
Since you are new to this whole thing, you’re not sure where to start or how to best assist you child. That’s why we have created this step-by-step intervention plan below, to give you a concrete place to begin in helping your son or daughter to have the best possible outcome.
Parents’ Step-by-Step Intervention Plan for Recently Diagnosed Children:
1. Take Care of Yourself-- The first step in helping your child has to be about YOU taking care of YOU. Many moms and dads of kids with high functioning autism and Asperger’s feel exhausted, overwhelmed, and sometimes defeated. They talk about difficulties in their marriage and other relationships. While there is no quick fix for resolving negative emotions, you can take measures to care for yourself so your youngster's disorder does not get in the way of your physical or mental health. The following may seem obvious, but is exceedingly critical to your long-term success in helping your child (this is why we put it first, because you will not be able to be the parent you need to be if you are sick - mentally and physically):
Eat a balanced diet and stay at a normal weight. Staying fit and healthy is essential to your physical and mental health.
Exercise regularly. Keep up with the physical activities you enjoy.
Plan time for a break away from your youngster. Find others (e.g., trusted family members and friends) who can help relieve you from these duties as needed. These breaks can help families communicate in a less stressful manner and can allow moms and dads to focus on their relationships with their other kids.
Review your calendar weekly. In the midst of the many appointments your youngster may have with therapists or other health care professionals, write in "appointments" for yourself and your relationships.
Schedule regular dates with your spouse, other kids in the family, and close friends.
Seek help if you or your spouse are feeling chronically overwhelmed or depressed, or the stress of caring for your youngster is affecting your marriage.
Watch for signs of anger, resentment, or opposition from other kids in the family. Your physician can help you find a qualified therapist to help you figure out the best ways to cope as a family.
2. Find a Support Network-- Parenting a youngster on the autism spectrum is taxing – it affects every part of your being. Making sure your youngster gets the help he or she needs can also pose a challenge, depending on whether quality support services are available in your area. Also, you are likely to have ongoing concerns about your youngster's prognosis and long-term well-being. Thus, you need to find strong social support for yourself and your youngster. Gathering your support network involves knowing ahead of time whom you can call for different types of support, even for emergencies, for example:
a friend you enjoy being with and who helps you survive disappointments and shares your victories
a neighbor or close friend who will help you out in a pinch
your youngster's physician, educators, therapists, or other caregivers you can ask for advice on major decisions regarding his or her treatment
a close friend or family member who is a confidant and whom you trust with your most personal feelings and concerns
In addition, plan outings with other parents who have kids with high functioning autism and Asperger’s. There are many parents who share your concerns and daily challenges. Talking openly with these parents can give you new insight and better ways of coping. Local and national groups can help connect families and provide much-needed sources of information. Ask your physician for referrals. Also, join online chat groups for moms and dads of kids with high functioning autism. The more you know about this disorder and the stronger your support network, the more empowered you will be to live confidently, knowing that your youngster can get the help he or she really needs.
3. Evaluate Your Youngster's Need for Medication-- While there is no medication for high functioning autism, there are drugs for specific symptoms these children may display:
Kids with high functioning autism who have anxiety, depression, or OCD behaviors can often be treated with anti-depressants.
Medicines may take a youngster with high functioning autism to a functional level at which they can benefit from other treatments.
Short attention spans can sometimes be improved with stimulant drugs that are used to treat autistic children who also have ADD or ADHD.
Some drugs may help prevent self-injury and other behaviors that are causing difficulty.
The American Academy of Pediatrics suggests targeting the main problem behaviors when considering medicines.
The FDA approved Risperdal in 2006 for the treatment of irritability in kids and teens with high functioning autism.
Some doctors may advise going off a medicine temporarily in order to identify whether it is having a positive or negative effect on your youngster.
4. Learn All You Can About High Functioning Autism-- Try to become an expert on this disorder. Here's how to start:
Become familiar with public policies so you can be your youngster's advocate in gaining the best education and care possible.
Communicate with other professionals and moms and dads and learn from those who've crossed this bridge before you as they share insights into common concerns.
Make sure that plans (e.g., 504 or IEP) are in place for your youngster to receive therapies at school.
Read all you can on high functioning autism so you understand the symptoms and behaviors and the differences in medications or alternative therapies.
Talk to your physician about the best treatments and goals for educational services so you and your youngster can take advantage of all available resources.
5. Educate Yourself About Treatment Options-- Experts agree that a youngster with high functioning autism should receive treatment as soon after diagnosis as possible. There is no cure for this disorder, but early intervention using skills training and behavior modification strategies can yield awesome results. Skills training and behavior modification helps with impaired social interaction, communication problems, and repetitive behaviors. Also, these methods can boost the youngster's chances of being productive at school and participating in normal activities. The American Academy of Pediatrics (AAP) recommends the following approaches for helping a youngster with high functioning autism improve overall function and reach his or her potential:
Behavioral training and management uses positive reinforcement, self-help, and social skills training to improve behavior and communication. Many types of treatments have been developed, including Applied Behavioral Analysis (ABA), Treatment and Education of Autistic and Related Communication Handicapped Kids (TEACCH), and sensory integration.
Occupational and physical therapy can help improve any deficiencies in coordination, muscle tone, and motor skills. Occupational therapy may also help a youngster with high functioning autism to learn to process information from the senses (i.e., sight, sound, hearing, touch, and smell) in more manageable ways. It can also help in performing normal activities of daily living.
Specialized therapies include speech, occupational, and physical therapy. These therapies are important components of managing high functioning autism and should all be included in various aspects of your youngster's treatment program.
Speech therapy can help your youngster improve language and social skills to communicate more effectively.
6. Look Into Necessary Dietary Changes-- Diet changes are based on the idea that food allergies cause symptoms of high functioning autism. Also, an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If you decide to try a specialized diet for a given period of time, be sure you talk to your doctor. Your youngster's nutritional status must be assessed and carefully measured.
One diet that some moms and dads have found helpful is a gluten-free, casein-free (GFCF) diet. Gluten is a casein-like substance found in wheat, oats, rye, and barley. Casein is the principal protein in dairy products. The theory of the GFCF diet is that these proteins result in an overproduction of opiates in the brain, contributing to social awkwardness and thwarting brain maturation in kids on the autism spectrum. Since gluten and milk are found in a lot of foods, following a gluten-free, casein-free diet is extremely difficult. Also, one supplement some moms and dads feel is helpful for their youngster with high functioning autism is vitamin B-6, which is taken with a magnesium supplement.
7. Consider Behavioral Training-- Behavioral training teaches children with high functioning autism how to communicate appropriately. This kind of training may reduce behavior problems and improve adaptation skills. Both behavioral training and behavioral management use positive reinforcement to improve behavior. These therapies also use social skills training to improve communication. The specific program should be chosen according to your youngster's needs. Consistent use of these behavioral interventions produces the best results. The youngster's functional abilities, behavior, and daily environment should be thoroughly assessed before behavioral training and management begins. Moms and dads, other family members, and educators should all be trained in these techniques, if possible.
Applied Behavior Analysis (ABA) is uniformly recommended by experts. The goal of behavior therapy programs is to reinforce desirable behaviors and decrease undesirable ones. For example, the youngster is taught to perform tasks in a series of simple steps and is given a predictable schedule. The behavioral therapy is then continued at home. Often times, both behavioral therapy and occupational therapy are given at the same time.
8. Educate Other Family Members-- Many mothers of children with high functioning autism talk about feeling isolated. Once the youngster is diagnosed, mothers often find that family members stop asking about the youngster, or the youngster is left out of birthday parties or other family gatherings.
Sometimes spouses and siblings admit to feeling stressed, lonely, and even angry because all attention is focused on the youngster with high functioning autism. While these feelings are natural, you can help your family members cope by educating them about high functioning autism and your youngster's specific needs.
Training family members about high functioning autism and how to effectively manage the symptoms has been shown to reduce family stress and improve the functioning of the youngster with high functioning autism. Some families will need more outside assistance than others, depending on their resiliency, established support systems, and financial situation.
In conclusion, be assured that this journey will be both demanding and rewarding. Raising a youngster with high functioning autism is the ultimate parenting challenge. But with the necessary support and ongoing training, you and your family can learn how to cope and work as a team. Parents of a child with high functioning autism talk about having very close relationships with him or her as they organize his or her therapy, hire specialists, purchase supplies, and act as his or her advocate to receive the best treatment. The biggest payoff comes from a unique bond you can have with your youngster and the joy you receive with every developmental accomplishment.
More resources for parents of children and teens with Asperger's and High-Functioning Autism:
• Anonymous said… My son (14) was on meds for 5 years and just last year I had him evaluated by an innovative health doctor and had a full blood work up done and he had some major deficiencies and was placed on high potency natural supplements and is completely off meds. I'm not saying it will work for everyone but he's been so much better. I had a therapist say something like this to me and I'll leave you with this... If your daughters kidneys were not working properly would you give her medicine to help their function? If the brain chemistry isn't working properly maybe it needs something to function better. And since I've done both... Maybe it's something we are just lacking that can correct that chemistry. Hope this helps. • Anonymous said… A heavy metals detox! Which you can do at home. That's a HUGE one • Anonymous said… did you notice an increase in inattention with the Zoloft? I did with my daughter and stopped it • Anonymous said… Great idea to take time for yourself, and spend time with spouse and other children but in reality it doesn't happen. • Anonymous said… Has anyone had success not putting their aspie with anxiety on meds? My daughter's (13) drs suggest meds for her and I'm not convinced. I'm very reticent on messing with her brain chemistry. • Anonymous said… I understand sometimes it is very necessary but how can you be sure the is a chemical issue without tests? I have many friends who work is the child phsycology field who see the negative parts of medicine that out scares me. How long before you can see a difference with just therapy alone? My girl has made an improvment with therapy. She finally tried something new. She had me sign her up for a cheerleadeing class. She doesn't talk or look at them but she makes it in the door. That is a big deal for her • Anonymous said… I was bullied into medicating my son from the school... After taking these meds for a period of time , he developed turettes .. I took him off them and eventually it subsided .. Sometimes your better knowing what your dealing with . • Anonymous said… I would say no a child phycologist will help them much better.. medication just masks the problem but doesn't really deal with it properly and so many side effects or health problems from them down the line..I would definitely try more natural ways..diet screen time sleep etc it all really helps. • Anonymous said… Medical cannabis oil, folks! That paired with therapy is what's life saving. As long as everyone votes the cure into office, its the cure to SOOO MANY things. Very much including autism. And something I learned... Is YOU need to provide all these services, if they aren't available to you for whatever reason. Do your research folks. :) YOU can help your child. YOU can be therapy for your child. The diet has A LOT to do with their behavior and anxiety. You are able to spend time with your spouse and other children. You just have to be smart with your time. And seriously, diet adjusted, great therapy, and not allowing the autism to be an excuse...you can live a normal life... Well, close to it. But what's really normal? • Anonymous said… My son just diagnosed last April - just starting therapy August 30 ~ I have a comment for both comments - first one about asd results- yes they did take Asperger diagnosis away here as well and now grade by numbers 1-3 - 3 being more severe- I came out and ask what he is considered- she said - yes hfa/ Asperger - on one category he was rated at a 1 other category 2- they gave me a copy of Dsm-5 - so maybe that will help- then you can go look up your test results to see how he was scored- a lot of good speakers are out there- I have learned so much but still so much to learn-next question about meds- I wonder same thing- I've fought so hard not to give anything but my sweet boy says things daily against hisself - 😰- there's not one day now especially now that school is back in that he doesn't put hisself down or even threats to hisself-I'm feeling like lately I'm doing more harm than good- the first 2 days of school he just wanted to come home- he was sent to nurse to talk to nurses- pretty much we made the decision to make him stay- not even knowing if that was really what I should do- then finally he's been staying- so I ask him to night - you are happy now right? He says no- im really not happy- I just miss my home- and you and I still just don't want to be with those kids all day- so in his heart he's no better- he's just suppressing- and being forced into that situation- I just don't know what to do anymore- I'm so upset tonight- just feel broke - - maybe I'm hurting him so much more by not getting him on medication to help this anxiety and depression- he's just not being helped right now- 😓 • Anonymous said… My son takes zoloft and it works great • Anonymous said… My son was diagnosed last September and the specialist told me they only diagnose now with ASD. None specific, I was annoyed as o need to know they name to find the right strategies. • Anonymous said… My sons school kept throwing it out there that meds would be helpful. (He's 8) I said no. Even his Dr's have said no so far. The school just doesn't want to deal with him. I won't put him on anything until it's absolutely needed. • Anonymous said… Struggling to find these services. • Anonymous said… That's v frustrating for you. I don't like labels generally but they can be helpful. The blanket term of ASD has been used since DSM 5 (2013). The latest changes to the Diagnostic Statistical Manual was most dramatic with regard to ASD. You might try asking your doctors what the diagnosis used to be called eg "Before DSM 5, would this have been Aspergers" for example. ! Try googling the subject and see what comes up - if you acquaint yourself with some of the terminology and commentary it will help you feel more equipped and better able to undretsand whatthe doctors are saying. Hope this is helpful.All the best. • Anonymous said… The diet has nothing to do with a food allergy besides that is poison for the body period! Heavy metals detox followed up with a gluten and casien free diet. High in B vitamins, Vitamin C, and Magnesium. Huge behavioral changes. Huge anxiety relief. • Anonymous said… Very useful post. We're recently diagnosed too and I have so much to learn, it's overwhelming! • Anonymous said… Don't medicate them full stop I know 1st hand what medication does to your mind and body and it's not a good thing giving it to your child is ignorant and lazy.
Here Are Some Quick Tips for Parents of Teenagers with Aspergers and High-Functioning Autism
Keep Doing The Things That Work—
• Be patient. Remember that kids and adolescents with an autism spectrum disorder (ASD) are relatively immature, socially and emotionally, compared to neurotypical kids of the same chronological age. Imagine sending a 10 year old off to high school (even if she has a chronological age of 14), or putting a 14 year old boy behind the wheel of car (even if he has a chronological age of 18)—or sending that 14 year old off to college or the army. We need to adjust our expectations for adolescents with ASD—and make sure they still have appropriate supports. Don’t pull the “ramp” out from under the “wheelchair”!
• Go with the flow of your child’s nature. Simplify schedules and routines, streamline possessions and furnishings. If your adolescent only likes plain T shirts without collars or buttons, buy plain T shirts. If your kid likes familiar foods, or has a favorite restaurant, indulge her.
• Have realistic, modest goals for what the adolescent or the family can accomplish in a give time period. You may need to postpone some plans for career goals, trips, culture or recreation.
• Kids still need structure, down time, soothing activities, and preparation for transitions.
• Communication: Establish verbal codes or gestures to convey that one or both parties need a time out: a chance to cool down before continuing a difficult discussion at a later time. Impersonal, written communication is easier for the adolescent to absorb: lists of routines and rules, notes, charts, or calendars. E-mail may become a new option. In so far as you can, keep your cool—they can’t handle our upset feelings. Walk away if you need to. Side by side conversations (walking, in the car) may be more comfortable for the adolescent than talking face to face. Tell your adolescent just what s/he needs to know, one message at a time, concisely.
• A regular bed time at a reasonable hour is more important than ever, if you can put/keep it in place. Regular routines of all kinds—familiar foods, rituals, vacations—are reassuring when the adolescent’s body, biochemistry, and social scene are changing so fast.
• Discipline & responsibility: A simple, low key, consistent approach is more important than ever, as adolescents become taller and stronger—not that physical restraint was ever very useful with our kids. Pick your battles. Set and enforce only your bottom line rules and expectations—matters of safety and respect. Write them down. Make sure both moms and dads/all involved adults agree on the rules. Give choices when possible, but not too many. Engage your adolescent in problem-solving; what does s/he think would work?
• Make sure thorough neuropsych re-evaluations are performed every three years. This information and documentation may be critical in securing appropriate services, alternative school placements, a good transition plan; choosing an appropriate college or other post secondary program; proving eligibility for services and benefits as an adult.
• Special interests may change, but whatever the current one is, it remains an important font of motivation, pleasure, relaxation, and reassurance for the adolescent.
Possible Shifts and Changes—
• Yes, adolescents do continue to grow and develop. You may get some nice surprises along the way, as you see the adolescent take an unexpected giant step toward maturity. I think of it as their neurons maturing on the vine! Maybe it’s just that they figure some things out, and get used to the feel of their new body chemistry.
• With or without ASD, most adolescents become less willing to take a parent’s word or advice; so we need to hook them up with other trustworthy adults. If you want your adolescent to learn or try or do something, arrange for the suggestion or information to come from a trusted adult other than a parent. E.g.: Handpick your adolescent’s guidance counselor. Look for other good mentors: Uncle? Scout or youth group leader? Psychologist, social worker, peer mentor, “Big Brother,” social skills group leader? Weight room coach or martial arts teacher?
• Boys may need to spend increased amounts of time with their fathers, and/or other male role models, as they undertake to become men. If Dad has taken a back seat, let him know his son really needs his attention now. If you are a single mother, look especially hard for male mentors at your son’s school or in the wider community.
• ASD can intensify parent/adolescent dynamics—which are challenging enough! The “job description” of a teenager is to pull away from moms and dads toward more independence; for our kids, the process can be extra messy—not least because they may be even less ready for independence than other adolescents. Although some adolescents with ASD are more docile and child-like, be prepared to tolerate/ignore considerable distancing, surliness, or acting out, knowing that it won’t last forever. At the same time, set some firm limits, and keep a close eye on the child/adolescent’s welfare.
Hygiene—
Instill the essential habit of a daily shower and clean clothes: peers, teachers, and future potential employers are very put off by poor hygiene. If possible, put your adolescent’s clothes on a well-organized shelf in the bathroom, near the clothes hamper.
Adolescents’ Mental Health—
• Adolescents with ASD are less prepared than neurotypical adolescents for the new challenges of sexuality and romance. Some are oblivious; others want a girl or boy friend, but are clueless about how to form and maintain a relationship. Boys especially may be at risk for accusations of harassment, and girls especially at risk for becoming victims. Teach appropriate rules, or see that another adult does. Look for supervised activities in which boys and girls can socialize safely together, supervised by a staff person who know ASD and can coach appropriate social skills.
• Seek out activity-based, practical social skills groups designed especially for adolescents. Participating in such a group, being accepted by group leaders and peers, is probably the most powerful way to allay an adolescent’s potential despair at not fitting in socially and not having any friends. The positive social experiences and new skills they learn will be assets for the rest of their lives.
• Even for a previously well-adjusted youngster, multiple stressors during the adolescent years may bring on anxiety and even depression. Stressors seem to include increased academic/abstract thinking and social demands at school, peer pressure, increased social awareness, and fears of the future. Highly anxious adolescents who do not get help may be at risk for hospitalizations, school failure, acting out (including alcohol and substance abuse), or even suicide attempts.
• Don’t panic, however—there are interventions you can provide. Appropriate school placement and staff training, exercise (martial arts, yoga), and/or appropriate therapy with a carefully chosen professional, may help control the level of anxiety. Meds may need to be introduced or adjusted.
Moms and Dads’ Mental Health—
• Kids with ASD can be difficult to parent and to love even when they are young. Often, our kids neither accept nor express love or other positive feelings in ways a neurotypical parent expects or finds most comfortable. Kids’ behavior can be trying or embarrassing for us. Adding adolescence to the mix can make this dilemma even more painful.
• If both moms and dads can largely agree about an adolescent’s diagnosis, treatment, and rules, it will save a lot of family wear and tear. To get your partner on the same page, attend ASD conferences or classes together. When you hear the same information, you can discuss it and decide what will work best for your adolescent and in your family. As you learn more about the disorder, you may also come to better appreciate each other’s contributions to your youngster’s welfare. Attend team meetings at the school together, or alternate which parent attends. Seeing your youngster’s therapist together (possibly without the child), or seeing a couples or family therapist, may help you weather a tough time together.
• Build and use any support networks you can: extended family, close friends, church/synagogue groups, and understanding school staff. At MYASPERGERSCHILD.COM parent support groups, you will find other wonderful moms and dads who will appreciate how hard you are working for your adolescent, and share their strategies, resources, and spirit. If you don’t have a good network, consider individual or family therapy for a little support during a stormy, demanding life passage. When you have a demanding adolescent, it’s good to be reminded once a week that your needs and feelings are valid and important, too!
• “Spray yourself with Guilt-Away!” Forgive yourself for being an imperfect parent, and for not loving your youngster “enough.” Forgive yourself for sometimes losing your temper, yelling, or handling a tense situation awkwardly. Forgive yourself for getting your adolescent diagnosed “late”—there are still plenty of years in which to help your youngster. Forgive yourself for not arranging play dates, or sports, or tutoring, the way other moms and dads may be doing. We each offer our youngster our own unique talents, interests, and qualities, as people and as moms and dads. We each do the best we can to gather the information, insights, resources, and services that will help our kids live and grow through adolescence. And—willingly or of necessity—we each end up making significant sacrifices for our kids. In the hardest years my mantra was: “The best I can do has got to be good enough—because it’s the best I can do!” It is a hard job; we are all heroic moms and dads (as a kind friend of mine once said to me).
• A regular bed time for the adolescent gives you time you can count on each evening for yourself and/or your partner. If you can build in regular respite—such as a night your adolescent spends with a grandparent once a month—go for it, and plan ahead for some relaxation, fun, or culture. (Divorced moms and dads may be able to count on a little time alone or with friends as long as they set up and adhere faithfully to a regular visitation schedule.)
• Encourage your adolescent to carry a wallet disclosure card to show if stopped by a police officer or other first responder. A lot of adolescents with ASD like to walk at night to unwind, and police may view their behavior as suspicious. You may want to introduce your adolescent to your local police community relations officer, and explain a little about ASD. Refer the police to MYASPERGERSCHILD.COM if they have questions.
• If you have not talked to your adolescent about ASD, you or someone else should do so—to the extent that the adolescent is ready to hear it. It’s tricky for adolescents—they so much want to be “normal” and strong and successful. A diagnosis can seem threatening or even totally unacceptable. In truth, however, the adults with ASD who do best are those who know themselves well—both their own strengths, which point them toward finding their niche in the world, and their own blind spots: where they need to learn new skills or seek out specific kinds of help.
• Adolescents need to learn when to ask for help, from whom, and how. It’s very helpful to have someone such as a trusted guidance counselor whose door is always open, and who can coach the adolescent in problem solving.
School—
• If you can afford it, you may prefer to pay private school tuition rather than paying a lawyer to negotiate with a financially strapped or resistant school system. However, a private school may not be the best choice. Some families move to a community with a better high school.
• Residential schools may be worth considering for some. The right fit can build tremendous confidence for the adolescent, give the moms and dads a break, and prepare everyone for the independence of the post high school years.
• Schedule regular monthly educational team meetings to monitor your adolescent’s progress, to ensure that the IEP is being faithfully carried out, and to modify it if necessary. Because adolescents can be so volatile or fragile, and because so many important things must be accomplished in four short years of high school, these meetings are critical. If an adolescent is doing very well, the team can agree to skip a month—but be sure to reconvene to plan the transition to the following year.
• See the MYASPERGERSCHILD.COM school list in the adolescent information packet. There are no easy answers to finding the mix of conditions where our kids can survive or even thrive; pick the best possible realistic choice, and help your adolescent adjust. Call MYASPERGERSCHILD.COM if you would like to discuss options. Some families hire educational placement services.
• Some adolescents adjust o.k. to middle/high school with appropriate supports and accommodations. Others, however, just cannot handle a large, impersonal high school. You may need to hire an advocate or lawyer to negotiate with your school system to pay for an alternative school placement, tuition, and transportation.
Transition Planning—
• Chapter 688 in Massachusetts mandates a transition from services delivered under the aegis of the Department of Education (DOE), through graduation or age 22, to services delivered by another state agency, such as the Massachusetts Rehabilitation Commission. Involve your state Rehabilitation Commission in the planning process, since they may be the sole or key provider of post-h.s. services for most adults with ASD.
• Consider delaying graduation in order to ensure that transition services are actually provided under DOE. It may be hard to convince an academically gifted, college bound student to accept this route. However, it may be very helpful for students who will need a lot of help with independent living skills and employment issues. Services need not be delivered within high school walls. Community college courses, adaptive driving lessons, and employment internships are just a few alternatives to consider.
• If you have not yet made a will and set up a special needs trust, do it now. Ask the lawyer about powers of attorney or other documents you may need once your adolescent is no longer a minor. Few moms and dads assume guardianship of a young adult 18 or older, but it may be necessary and appropriate in some situations.
• Social skills are more essential to employment success than high IQ or a record of academic achievement. Make sure the IEP provides for social skill learning/social pragmatic language. For example, a good overarching goal is: “Bobby will learn the social skills appropriate to a 9th grader.”
• The transition plan (part of the IEP) should address the skills a teenager needs while in high school, in order to be prepared for the kind of independent life s/he wants to lead after graduation. Many high schools are unfamiliar with transition planning, however—especially for college bound students. The more you know as a parent, the more you may be able to ensure that a solid transition plan is written and carried out.
• What kind of living situation, employment, and transportation fit your adolescent’s picture of his/her future at age 18 or 25? Once the goals are set, where can the adolescent learn the necessary skills? Consider academic courses, electives, extracurricular activities, and additional services within and outside the high school (e.g. community college, adaptive driving school).
• You want input and ownership from the adolescent as far as is possible, but moms and dads can and should have input. You may need to have team meetings when the adolescent is absent, so you can speak frankly about your concerns, without fear that the adolescent may feel you lack respect for or faith in her/him.
• An activity the adolescent can walk to is great. Learning to use public transportation is also great. Consider buying a T pass, or rolls of quarters.
• Look for opportunities—e.g. in the summer—for a sheltered, successful overnight stay away from home with no parent. Examples: long weekend visits to relatives, a week or two of a carefully chosen sleep-away camp, taking a course on a college campus. MYASPERGERSCHILD.COM has a summer and recreation resource list.
• Look for volunteer activities or part time jobs at the high school or in the community. Be persistent in asking the school to provide help in the areas of career assessment, job readiness skills, and internships or volunteer opportunities. They probably have such services for intellectually challenged adolescents—but may not realize our kids need that help, too. They may also not know how to adapt existing programs to meet our kids’ needs.
• Teach laundry and other self-care/home care skills by small steps over time. Try to get the adolescent to take an elective such as cooking or personal finance at the high school.
College—
• Because your college student is no longer a minor, many colleges generally will not communicate openly with moms and dads, nor disclose the student’s disability without the student’s permission. Some colleges will allow the student to sign a blanket waiver to release information to moms and dads, but many will only allow limited waivers or none. The burden is on the student to disclose, to ask for help, and to let moms and dads know about problems—things that are hard for our kids.
• If your adolescent seems like a good candidate for college, take him or her to visit colleges during the spring vacation weeks of the junior year of high school, or during the summers before junior and senior year. Visits reveal a lot about what environment the adolescent will prefer. Purchase a large college guide to browse (e.g. Fiske). Also look at Colleges that Change Lives by Loren Pope: Clark University, Hampshire College, and Marlboro are New England colleges in this book.
• Not all adolescents are ready for a residential college experience right after high school. To decide, use the evidence of how the adolescent did at sleep-away camp or similar samplings of independence, and look carefully at executive function skills (organizational skills). As an alternative, community colleges offer a lot of flexibility: easy admission, low cost, remedial courses if necessary, the option of a light course load, and the security of living at home. Some college disability offices are more successful than others at providing effective, individualized support. However, if the adolescent is living at home, you may be able more easily to sense trouble, step in with help, or secure supports your young adult needs to succeed.
